Friday, September 20, 2013

Harvey Mysel has posted the following (reproduced in its entirety) here:

How Conflicts of Interest Negatively Impacts a Patients Chance to have a Kidney Transplant

Patients who need a kidney transplant expect their dialysis clinic and/or their transplant hospital to provide them with information on the best medical options available. CMS (Centers for Medicare and Medicaid Services) requires dialysis companies and transplant hospitals to provide this information. These companies may “technically” abide by these rules however, the information is often vague and not very useful.

The Conflict for Dialysis Companies
CMS requires dialysis companies to ask: “Has the patient been informed of kidney transplant options?” A Yes/No box needs to be checked. A dialysis company’s mission is to dialyze patients, not to educate them about kidney transplants. It’s a conflict of interest for the dialysis company. Once a patient receives a kidney transplant, they don’t need the services of the dialysis company. What company will educate their customer to an option that will result in losing their customer?

From the statistics you can see there is a problem in the dialysis community. There are over 400,000 people on dialysis but only 98,000 are on the kidney transplant waiting list. By some estimates, 10% of all dialysis patients die every year. Many dialysis patients were good candidates for a kidney transplant when they first started dialysis, but after years of treatments their health deteriorates and the majority is no longer healthy enough to recover from a kidney transplant.

The Conflict for Transplant Hospitals
CMS requires transplant hospitals to tell their patients they can register at more than one transplant hospital. The primary reason to register at another transplant hospital is to be on a shorter waiting list. Providing this information to their patients is a conflict of interest for the hospital. A hospital might tell their patients they could register somewhere else, without letting them know the benefit of doing so. There are regions in the U.S. where the wait for a deceased donor kidney is 5-­-10 years, while in another area, which might only be a 1.5 hour drive, the wait time is only 12 months.

There’s another conflict that can develop for the transplant hospital. Patients are given excellent advice and encouraged to find a living kidney donor. There are many benefits of a living donor kidney versus one from a deceased donor.

The biggest benefit is a kidney from a living donor lasts on average twice as long as one from a deceased donor. Statistics show about one-­-third of all potential donors who are evaluated are not compatible with their intended recipient. Potential donors could have an incompatible blood type or the recipient has certain antibodies, also referred to as being sensitized that will result in rejecting this person’s kidney. High levels of antibodies can develop as a result of a previous transplant, a blood transfusion or for some women giving birth.

Better anti-­-rejection drugs and Kidney Paired Donations (KPD) also called paired exchanges, chains or swaps allow these incompatible donors to help their intended recipient by donating to another recipient who also has an incompatible donor. KPDs have the potential of adding thousands of kidney transplants a year if a centralized national program is developed and all incompatible pairs are registered in the same pool. Unfortunately there isn’t one centralized program, but many different KPD options. To read more about KPDs go to: www.lkdn.org/LKDN_Paired_Exchanges.pdf

Since there are many KPD programs, the likelihood of being matched with another incompatible pair is increased when you join other KPD programs. It’s a numbers game. There are exceptions to this, if there are many pairs with rare blood types or when a pool contains many difficult pairs to match due to the recipient being sensitized. To read more about the paired exchange conundrum go to:http://www.lkdn.org/LKDN_The_Paired_Exchange_Conundrum.pdf

Here’s the conflict. Hospitals are under no obligation to tell their incompatible pairs about the benefits of registering with other KPD programs. This could result in a patient going to another hospital to receive a transplant. What company will educate their customer to an option that will result in losing their customer?

Kidney dialysis and kidney transplants are very profitable for these institutions. It costs approximately $83,000 a year to provide dialysis services for one patient and a kidney transplant can generate approximately $125,000 for a hospital.

What could be done to help patients understand their options and remove these conflicts of interest?

For the dialysis companies, CMS could authorize an independent company to educate the dialysis patients about kidney transplants. There’s no shortage of organizations that are qualified to provide these services.

For the transplant hospitals, CMS and/or UNOS could also authorize an independent company to educate patients about registering at other transplant hospitals and include the options patients have when a potential donor is incompatible.

A kidney transplant, whether from a deceased or living donor is a life changing and complicated process. Patients who are in need of a kidney transplant need much more help in understanding the options available to them.

Harvey Mysel is a two-­-time kidney transplant recipient and Founder of LKDN (Living Kidney Donors Network) a nonprofit organization that offers workshops and webinars to educate people in need of a kidney transplant about living kidney donation. LKDN also helps prepare those in need to effectively communicate their situation to family members and friends. LKDN’s website is www.lkdn.org and Harvey can be reached atharvey@lkdn.org